New insights have emerged into the timing and prodromal nature of neuropsychiatric symptoms in systemic lupus erythematosus and other systemic autoimmune rheumatic diseases, according to a recent study.
Researchers of the INSPIRE study examined patient-reported timings of 29 neuropsychiatric (NP) symptoms relative to the onset of systemic lupus erythematosus (SLE) non-NP symptom onset. They collected data from 676 SLE patients and 400 clinicians through surveys and interviews conducted between 2022-2023.
The study, published in eClinicalMedicine, found that most NP symptoms did not initially present around the time of SLE diagnosis, contrary to prevailing assumptions. Researchers found that 54% of patients experiencing hallucinations reported their first occurrence more than a year after disease onset. Additionally, the researchers highlighted that certain NP symptoms, such as disrupted dreaming sleep, nightmares, and “daymares” might serve as prodromal indicators for SLE and other SARDs. They reported, 61% of SLE patients who experienced hallucinations noted increasingly disrupted dreaming sleep prior to these episodes.
Researchers’ interviews with participants revealed significant inter-patient variation in symptom progression during disease flares.
“I get hypomania which I believe is directly due to SLE … I have previously had diagnosis such as 'affective disorder' bipolar type II and it took several years, and several different psychiatric professionals involved in my care before anyone professional thought my mental health issues are very likely due to neuropsychiatric SLE … I have never had neurology or brain scan investigations, but I always had stable "normal" mental health prior to having SLE symptoms,” said study participant 1395 from England.
While a U.S. participant spoke about their major depression diagnosis, and how they didn’t think they had an autoimmune illness based on the timing of their first episode of major depression.
However, the researchers noted, “symptoms often progressed in a similar manner in future flares in each individual, thus potentially aiding quicker treatment in subsequent NPSLE flares if monitored.”
Instead of traditional reliance on diagnosis time for attributing NP symptoms to SLE, the study advocates for a timeline-based approach, recognizing the onset of NP symptoms relative to other SLE symptoms to enable quicker identification and treatment of impending flares.
Within the study, researchers underlined the importance of patient-clinician collaboration in documenting and monitoring symptom progression, potentially offering an "early warning system" for SLE and systemic autoimmune rheumatic diseases (SARD) flares and calls for further exploration of NP prodromal phases to improve care for patients with SLE and other SARDs.
The study was funded by The Lupus Trust. Some authors have received consultancy fees from pharmaceutical companies.
